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Ehlers-danlos & Dysautonomia Resources

Mighty sent out a few stories about EDS today & the first made it seem like all people with EDS dislocate at the snap of a finger. This is not true. EDS is a spectrum and not all Zebras dislocate. Some of us sublux, and some of us just have unstable joints that grind.

Drs in med school often get this in their head because only the extreme end us covered in the literal 15 min where they discuss Ehlers-Danlos... so EDS gets missed, a lot.

So it is really important that we educate ourselves and become experts in our condition.

Anyway I think that knowledge is really critical especially when dealing with medical conditions that are not well known (like ehlers-danlos & dysautonomia).

Some good Ehlers-Danlos resources.

Ehlers-Danlos Society.
When you look at the Beighton Criteria to see if you match, know that as you age you meet less and less if the flexibility criteria. I was 8/9 at 23. Years of eds wear and tear, at 45 I am now 5/9, and for example they show that your thumb needs to meet your forearm. Mostly there counts too.

Bizzarly a lot (but not all EDSrs need extra novacaine at the dentist.
Also EDSrs tend to have some double jointedness. I was pretty shocked that most people's thumb is straight (the tip doesn't bend back) and that even my 5 yo neice can't even get pinky back to 90 deg (let alone more)

Also, it is a common misconception that people with EDS have to dislocate joints. This is not the case. EDS hypermobility is on a spectrum. Also where tmyou fall in the spectrum does not necessarily indicate how much pain you will have as there are a variety of flavors and causes.

Anyway Dr Spanos site has info for patients and also Drs and specialists that don't specialize in EDS.

He also recommends the book Disjointed, one of the few books for lay people on EDS. (On amazon)

The Ehlers-Danlos society
Is a good source for FINDING DOCTOR'S that are in the know. I think it is under resources. If you don't find a Dr in your area
Look under resources support groups and contact your local support group.

Most maintain a list if EDS Drs and eds ware oroctitioners like physical therapist, pain specialists, etc and if you don't see one, ask the board.

This is also a great place to ask about doctor's that treat dysautonomia ad 50% of EDSers also have Dysautonomia.

Dysautonomia (aka autonomic neuropathy).

50% of people with EDS develop some type of Dysautonomia.

Do I think it is a good idea to be aware of the symptoms of Dysautonomia as it is also not a well known disorder.

There is a # group called autonomicneuropathy you may wish to follow. It is also a name for Dysautonomia.

There is an excellent book called The Dysautonomia Project that I highly recommend that you get from Amazon.

It gives a really good overview of dysautonomia gets into different kinds and treatments and also comorbidies (like autoimmune disorders are common
#Ehlers -danlos

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What was the silliest or scariest imaginary monster (or both) you you feared as child.. AND that you nolonger fear?

Cartoon is Farside. My all time favorite!

Hopefully I didn't trigger anyone with this.. 'cause there are some real monsters many if us encountered 😬

So I'm going out on a limb here with mine.
Still respect me in the AM?🙏

A few pen pals & I end our conversations with a question or two. That was the latest one.


I was TERRIFIED of was Mork's boss from the show Mork & Mindy from the US. It was about these humanoid aliens that and it was kind of a dumb show. Totally G rated (like ALF).
I think I walked in on one my parents were watching and it both scarred and Scared me.

Mork would get orders from his boss on Ork in the toilet bowl.

I was also CONVINCED there were a Plethora of monsters in the dark.. And I implemented The Farside concept of a monster snorkel as a counter measure.

I should say I created a monster mystifying tunnel for fresh air out of my covers so that they couldn't see me.
(Because if you can't see them, they can't see you)

My father had convinced me that there was an octopus living under my bed and I swear I could feel my bed move from the octopus every night. **

So this combined to a Very Big Problem when I had to pee during the middle of the night!!

I would leap off at the end of my bed because my bathroom door was about 5 ft from the edge of the bed (octopus avoidance).

Then I would hover over the toilet so Mork's boss couldn't get me. Also, I was especially concerned that the the head was most dangerous when I flushed.

So I would stand there with one arm out stretch towards the toilet lever, and one towards the light switch. I would try, as close to simultaneously as possible, to flush the toilet & switch off the light.

Then I would run and take a flying leap about 3 ft from the edge of the bed (to avoid being snatched by the octopus) onto my bed pull the covers over my head and create a monster snorkel so that all the monsters in the dark wouldn't be able to see me.

I had a Very vivid imagination as a child (said very dryly)

**(My dad also convinced me that an alien would creep in. One time he crawled in with a green Afgan over him making alien noises. I ripped the brass lamp out of the wall & brained him with it. To this day I haven't told him I knew it was him..but that stopped alien visitation). I'm convinced he had no idea how traumatic his stories were. Our family just has a very warped sense of humor...)

On a mundane level:
Well I spent about 2 years being terrified of vampires and would sleep with this little stuffed t-shirt pillow that I made at summer camp across my neck so that it vampire couldn't bite me in the night. I love vampire stuff by the way, now.

Silliest monster I created Lemonquist Sockworth. He ruled his reality from a top a pile of mismatched socks. FYI, Clothes dryers are a portal to a parallel dimension that sucks one member of a sock pair to his realm.
He was a benevolent monster & had no scare the children or world domination ambition



Direct Care Physicians....Why I love this model & anyone else have experience with or something to say?

So I have A Lot of things going on with me several rare diseases/disorders & a few run of the mill,
I started getting sick in my early 20's and was disabled with 'just' Narcolepsy with Cataplexy and Sudden onset Migraines that took up 20+ days a month...
And things jyst continued to pack onto that snowball over the years....and they keep coming at me.
They are listed in my profile & some hashtags. Feel free to message me with questions about them.
In seattle I lucked out with private complementary medicine practices that had a minimum of 30 min appointments.
I moved back to Raleigh NC in 2019 & had no problems finding some great specialists but it took me about a year (some bad 15 min Drs, some who told me they literally did not have the time to be a good physician because my medical history was I couldnt see someone fir a UTI, but panhypopituitarism? No problem.
Finally the person in charge of Dukes Primary Care section told me she thought i needed a Direct care physician (DCP).
I see Zane Lapinskies at
DCPs are doctors that want to go back to the old day where they had less patients and could actually spend time with them.
Instead of having 2000-3000 patients, they generally limit themselves to 500. Instead of billing insurance they charge a monthly fee (usually between $50 & $100).
They can afford to do this because they dont bill insurance. Turns out dealing with insurance companies eats up about 60% of a practices income, so they have to have a lot more patients to make up for that.
DCP's dont bill insurance and you cant bill yor insurance for them.
HOWEVER for that fee,
You get a physician you never pay a copay to, all appointments are a minimum of 30 min, longer if needed, same day if needed, are available 24/7 by phone (also text and email) can do telemedicine, have no limit on the number of visits you can make a month, get really involved in your care (like researching and learning about your conditions, calling your specialists or other doctors to coordinate care, reading and staying on top of your medical situation, act as a guide and sounding board for complex things...and much much more).
You can often have labs done there for much cheaper than the coinsurance cost or they can refer you out to a lab that bills your insurance & your insurance covers your specialists medications tests mri's and all the costly stuff).
This can also be great if you have a high deductible health plan or need extra time & care.
I have met my maximum out of pocket on my medadvantage plan in the first 6 mos of every year for 10 years. Running out of space.
For me and all my conditions it has absolutely been worth it.
I love having a doctor that stays abreast of what is going on, can respond immediately and acts as a great sounding board.
The link above 4 DCP info.